I sit in my happy place snuggling Will. I haven't been able to wipe the smile off my face all day. He's such a fighter, I can feel it.
Call me crazy but I love the smell of his breath. I put my nose down close and breath in his scent. It's sooo sweet.
The doctor comes in with a somber look on his face. My heart suddenly starts beating faster and I brace myself.
"The results are back from Will's repeat EEG," he begins. "It definitely doesn't look normal. We saw two seizures.. even though he's taking anti-seizure medication."
The smile that I couldn't wipe off my face is gone.
More seizures.
I have been so focused on Will's progress with his lungs, I haven't even thought much about his potential brain malformation. The ultrasound shows "abnormal findings". But of course they don't know what that means for Will. And now he's having more seizures.
The nurse informs me that the more seizures he has, the more damage his brain receives. She tells me they're starting an IV and giving him a new anti-seizure medication, followed by another EEG to make sure it's effective.
More questions and more waiting.
Monday, February 24, 2014
Saturday, February 22, 2014
Yeay!
Will is doing FANTASTIC on the cpap!! Yeay! He also weighed in at 3 lbs 1 oz today! AND we got a picture of him with one of his first outfits on. :) Big day for Mr. Will. I can't stop smiling!
Thursday, February 20, 2014
CPAP?
The doctor made another adjustment on Will's ventilator settings this evening. If his blood gas at midnight looks good, they'll try to switch him from the vent to CPAP again! So excited and anxious at the same time!
Wednesday, February 19, 2014
The little things
My sweet boy.
His eyes rest on mine and I feel a new sense of joy. I try to communicate with him, to tell him to keep fighting. I rest my fingers on his delicate skin and love feeling his softness.
Why am I so blessed?
I glance at his stats and am relieved to see that everything looks great. He seems to be comfortable. His oxygen has been around room air all day!
I look back at my little man and see loads of bubbles drifting down his chin. I LOVE being able to do things for him.. even if it's just wiping his slobber. :) I mop up his face, careful to not bother the face tape holding his breathing tube in place. To clean out his mouth, I use a saline-soaked Q-tip and swirl it around. To my surprise, he starts to suck on it! It's funny how excited I get over something so small, but I can't help it. I sit there for a few minutes and thoroughly enjoy watching him use the Q-tip as a binky.
Feeling so blessed, just to be close to him. I love him more than words can say.
His eyes rest on mine and I feel a new sense of joy. I try to communicate with him, to tell him to keep fighting. I rest my fingers on his delicate skin and love feeling his softness.
Why am I so blessed?
I glance at his stats and am relieved to see that everything looks great. He seems to be comfortable. His oxygen has been around room air all day!
I look back at my little man and see loads of bubbles drifting down his chin. I LOVE being able to do things for him.. even if it's just wiping his slobber. :) I mop up his face, careful to not bother the face tape holding his breathing tube in place. To clean out his mouth, I use a saline-soaked Q-tip and swirl it around. To my surprise, he starts to suck on it! It's funny how excited I get over something so small, but I can't help it. I sit there for a few minutes and thoroughly enjoy watching him use the Q-tip as a binky.
Feeling so blessed, just to be close to him. I love him more than words can say.
Wednesday, February 12, 2014
CPAP and Bradies
February 9th
As I wait on the line for Will's nurse, I start to hum along with the "please hold" music. I've memorized every song. The tune of this particular one is upbeat and happy, but I can't help but feel anxious. His nurse answers and I immediately know there's something wrong. My heart skips a beat and I hesitantly ask her how my big guy is doing.
February 10th
More bradies. Some days it is so hard to keep the faith.. to keep going. I drive home from my short NICU visit and my heart feels so heavy. The emotional ups and downs are wearing on me. The tears start and I let them come.
The next track on my CD starts and all of a sudden, my emotion turns from pain to peace. I had been listening to the music from "The Lamb of God", which tells about the Savior's last days and His resurrection. At the beginning of this particular song, Thomas didn't have enough faith and didn't believe the apostles when they told him they had seen the Lord.
He sings,
Thomas then sees the Lord for himself. The song continues and he pleads with the Savior to help him with his faith.
The hards days will come. And when I don't feel like I can keep going, I, like Thomas, will plead for my Savior to help me with my faith.
February 12th
I drive to the hospital as soon as Mr. Brigs goes to preschool. I'm pretty sure my car takes me there as if on auto-pilot. Today is a big day for Will. His blood gases have been excellent the last few days and the doctors have been able to ween him on the ventilator. Sooo, they're going to give the CPAP a whirl.
I'm feeling anxious as I walk into the hospital entrance. As I stand in the elevator, I can't help but listen to a conversation a young teenage girl is having with her mother. It is apparent the girl has just given birth. She is very mad at her doctor because her newborn baby had a few bruises after birth.
Bruises?
I want to turn to her and ask if she would rather her baby be breathing or have bruises. But I don't. I choke back my tears and take a deep breath.
I walk into Will's private room and notice extra equipment. They are getting ready to take his breathing tube out. I stand by as they get everything ready and his heart suddenly drops. I immediately start to pat his back and tell him he's OK. But my heart is beating so hard I think it might stop. Maybe I'm over-reacting but I can't help it.
He recovers after a few agonizing minutes and they change him over to the CPAP machine. Now he's doing all the breathing on his own! I keep cheering him on as his chest heaves in and out. I sit by his side for a few hours then leave to take care of my other children. When I get home, the first thing I notice is that my house is clean. My dear sweet friend snuck into my house and cleaned it for me! I have so many angels in my life. A little later, I call into the hospital to get an update. Will's oxygen level is pretty high and he's fighting so hard to keep breathing.
Back to the ventilator.
My good friend gave me some good advice. She said, "Don't be too disappointed if he has to go back on the ventilator. He'll get to the CPAP eventually." Because of this comment, I was mentally prepared for Will to take a step backwards.
I'm just grateful to have him for another day. I love him to pieces and long to have him home where I can snuggle him anytime I want and change his diapers and clean his spit up.
That will truly be heaven on Earth.
As I wait on the line for Will's nurse, I start to hum along with the "please hold" music. I've memorized every song. The tune of this particular one is upbeat and happy, but I can't help but feel anxious. His nurse answers and I immediately know there's something wrong. My heart skips a beat and I hesitantly ask her how my big guy is doing.
"He's had a rough night," she says.
My heart skips two more beats and I don't want to ask for further details. But I do. She tells me that Will had an episode where he bradied.
Bradied?
I know I've heard this term before. I can't remember what it means but I know its not a good thing.
She tells me, "Will's heart rate dropped to 40 and his oxygen saturation was at 30%. He turned pale and it took him a while to come back."
So I was right. Brady is not a good term. But why did he brady? Apparently, there was a lot of milk in the back of his throat. Which can only mean he has reflux. In premature babies, reflux can cause a decrease in their heart rate because when the milk comes back up, it stimulates the vagus nerve. At least that's what they think happened.
And the roller coaster continues.
February 10th
More bradies. Some days it is so hard to keep the faith.. to keep going. I drive home from my short NICU visit and my heart feels so heavy. The emotional ups and downs are wearing on me. The tears start and I let them come.
The next track on my CD starts and all of a sudden, my emotion turns from pain to peace. I had been listening to the music from "The Lamb of God", which tells about the Savior's last days and His resurrection. At the beginning of this particular song, Thomas didn't have enough faith and didn't believe the apostles when they told him they had seen the Lord.
He sings,
"You've seen the Lord?
You've seen Him risen?
You've seen His hands and touched His side and you are certain?
But I've not seen Him.
And I must see Him.
Until I've seen His wounded side, until my hands have felt His hands,
I will not know nor yet believe."
"My Lord and my God, touch my lips and bid them sing words my tongue would not conceive.
That my soul my join in praise and forevermore believe.
Oh touch my heart and bid it know.
Thou hearest every plea and though I may not see yet thou wilt make me whole again."
The hards days will come. And when I don't feel like I can keep going, I, like Thomas, will plead for my Savior to help me with my faith.
February 12th
I drive to the hospital as soon as Mr. Brigs goes to preschool. I'm pretty sure my car takes me there as if on auto-pilot. Today is a big day for Will. His blood gases have been excellent the last few days and the doctors have been able to ween him on the ventilator. Sooo, they're going to give the CPAP a whirl.
I'm feeling anxious as I walk into the hospital entrance. As I stand in the elevator, I can't help but listen to a conversation a young teenage girl is having with her mother. It is apparent the girl has just given birth. She is very mad at her doctor because her newborn baby had a few bruises after birth.
Bruises?
I want to turn to her and ask if she would rather her baby be breathing or have bruises. But I don't. I choke back my tears and take a deep breath.
I walk into Will's private room and notice extra equipment. They are getting ready to take his breathing tube out. I stand by as they get everything ready and his heart suddenly drops. I immediately start to pat his back and tell him he's OK. But my heart is beating so hard I think it might stop. Maybe I'm over-reacting but I can't help it.
He recovers after a few agonizing minutes and they change him over to the CPAP machine. Now he's doing all the breathing on his own! I keep cheering him on as his chest heaves in and out. I sit by his side for a few hours then leave to take care of my other children. When I get home, the first thing I notice is that my house is clean. My dear sweet friend snuck into my house and cleaned it for me! I have so many angels in my life. A little later, I call into the hospital to get an update. Will's oxygen level is pretty high and he's fighting so hard to keep breathing.
Back to the ventilator.
My good friend gave me some good advice. She said, "Don't be too disappointed if he has to go back on the ventilator. He'll get to the CPAP eventually." Because of this comment, I was mentally prepared for Will to take a step backwards.
I'm just grateful to have him for another day. I love him to pieces and long to have him home where I can snuggle him anytime I want and change his diapers and clean his spit up.
That will truly be heaven on Earth.
Wednesday, February 5, 2014
more updates. :)
Will is doing pretty good. He continues to do well on the ventilator! They are going to ween him a little bit tonight and see how he does. He's been at about 25% oxygen which is great! He's also gained some weight. He's almost 2 lbs 7 oz! Starting to get rolls. :)
Changing his diaper tonight was an adventure. We had a not-so-preemie explosion in the incubator. That's my boy! He's pooping great!
I was given some good advice from one of the doctors the other day. She said, "I want you to find at least one good thing with Will each day and focus on that." It has been so good for me! I have decided to store away his "problems" and potential "issues" and focus on all the good things that are happening. It has been really good for me. :)
It has been so humbling to realize how many people are praying for my little guy. On Sunday, I was completely overwhelmed at how many church members approached me and told me we are in their prayers. How could I ever find the words to express my gratitude?
Thank you everyone. SO much!
Changing his diaper tonight was an adventure. We had a not-so-preemie explosion in the incubator. That's my boy! He's pooping great!
I was given some good advice from one of the doctors the other day. She said, "I want you to find at least one good thing with Will each day and focus on that." It has been so good for me! I have decided to store away his "problems" and potential "issues" and focus on all the good things that are happening. It has been really good for me. :)
It has been so humbling to realize how many people are praying for my little guy. On Sunday, I was completely overwhelmed at how many church members approached me and told me we are in their prayers. How could I ever find the words to express my gratitude?
Thank you everyone. SO much!
Faith
I was reading in the scriptures and was drawn to Doctrine and Covenants 35: 8-10. It says,
8 For I am God, and mine arm is not shortened; and I will show miracles, signs, and wonders, unto all those who believe on my name.
9 And whoso shall ask it in my name in faith, they shall cast out devils; they shall heal the sick; they shall cause the blind to receive their sight, and the deaf to hear, and the dumb to speak, and the lame to walk.
10 And the time speedily cometh that great things are to be shown forth unto the children of men;
When we started this journey with Will, it was not easy to have faith. I kept thinking, 'How could I possibly have faith in a miracle when it hasn't happened for us in the past?' We had so much faith that Heavenly Father would save our daughter. But she died. Then the questions began. Why do bad things happen to good people? Aren't we good parents? Did we not have enough faith? The pain of that experience is still with me every day. So how can I possibly have faith through this experience?
It is a daily choice. Does Heavenly Father love me? Without a doubt. Does he want what's best for me? Of course. But sometimes we don't know what that might be. I know one thing, I wouldn't trade the things I've learned and the strength I've gained through my experiences. Besides, who's to say a miracle DIDN'T happen? Our perfect baby girl was brought into this world to receive her body. I get to be her mother forever. Is that not a miracle?
After reading this scripture in Doctrine and Covenants, I felt a sure hope blossom in my heart. I DO have faith that Heavenly Father can heal Will. I KNOW He can do it. Does that mean He will heal him? That is to be seen. But I know He can, and that's the point. I need to hold onto my faith and hope. I need to know at the end of the day that I've given Will everything I have. But more importantly, I need to know I've given my Savior everything I have.
"Doubt your doubts before you doubt your faith."~ President Dieter F. Uchtdorf
8 For I am God, and mine arm is not shortened; and I will show miracles, signs, and wonders, unto all those who believe on my name.
9 And whoso shall ask it in my name in faith, they shall cast out devils; they shall heal the sick; they shall cause the blind to receive their sight, and the deaf to hear, and the dumb to speak, and the lame to walk.
10 And the time speedily cometh that great things are to be shown forth unto the children of men;
When we started this journey with Will, it was not easy to have faith. I kept thinking, 'How could I possibly have faith in a miracle when it hasn't happened for us in the past?' We had so much faith that Heavenly Father would save our daughter. But she died. Then the questions began. Why do bad things happen to good people? Aren't we good parents? Did we not have enough faith? The pain of that experience is still with me every day. So how can I possibly have faith through this experience?
It is a daily choice. Does Heavenly Father love me? Without a doubt. Does he want what's best for me? Of course. But sometimes we don't know what that might be. I know one thing, I wouldn't trade the things I've learned and the strength I've gained through my experiences. Besides, who's to say a miracle DIDN'T happen? Our perfect baby girl was brought into this world to receive her body. I get to be her mother forever. Is that not a miracle?
After reading this scripture in Doctrine and Covenants, I felt a sure hope blossom in my heart. I DO have faith that Heavenly Father can heal Will. I KNOW He can do it. Does that mean He will heal him? That is to be seen. But I know He can, and that's the point. I need to hold onto my faith and hope. I need to know at the end of the day that I've given Will everything I have. But more importantly, I need to know I've given my Savior everything I have.
"Doubt your doubts before you doubt your faith."~ President Dieter F. Uchtdorf
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